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why i’d follow neurodiversity on tour, if like that were a thinghttps://adiaryofamom.com/2016/09/08/why-id-follow-neurodiversity-on-tour-if-like-that-were-a-thing/
https://adiaryofamom.com/2016/09/08/why-id-follow-neurodiversity-on-tour-if-like-that-were-a-thing/#commentsThu, 08 Sep 2016 11:59:59 +0000http://adiaryofamom.com/?p=25258Continue reading →]]>If you’ve been around here for a while then you know about my celebrity crush. No, not George Clooney, my OTHER celebrity crush, Barb Rentenbach.

Barb is a nonspeaking autistic woman who, for lack of a more delicate phrase, kicks ass. Along with her therapist extraordinaire, Lois Prislovsky, Barb is an author, producer, and co-host of a radio show. Yes, really. Because with a little thought and creativity (and, in this case, the money to emply a voice for hire), pretty much nothing is impossible.

First of all, it usually takes me about a minute just to say, “Hi, I’m Jess.” Secondly, I’m pretty sure I could talk about the benefits of honoring neurodiversity for days on end, so the only tough part of this was going to be the search for brevity. But no matter, I was in.

I made the call, awkwardly recorded my piece, and went on my merry way, pretty much forgetting about the whole thing because, let’s be honest, my brain is pretty much functioning on triage these days – if it ain’t bleeding, it aint’ staying put.

But then I got a note from Lois and Barb containing the presentation they’d made highlighting a few of the responses they’d gotten. And well, I’m sure that I don’t have to tell you that I was kind of a hot mess after watching it. Sooo, if you’ve got just a couple of minutes to spare, my friends, I humbly invite you to spend them with Lois, Barb, Temple, Jane, and me.

Because it’s about time that we made room for all kinds of beautiful minds.

Transcript

Lois:

What is Neurodiversity? Well Barb Rentenbach and I just wrote a book about it so we have some thoughts on the matter.

Our company is called Mule and Muse Productions – and we are NOT normal.

Barb will not be speaking in this video because she is a non-verbal autistic and this is YouTube not Lourdes.

Barb will share her thoughts on Neurodiversity at the close of this video by using excerpts from the audiobook version where her typed words are read ALOUD by voice actor Chad Dougatz whose neurodivergence helps him excel at SMOOOOOTH talking.

Barb and I know from personal and clinical experience that understanding more about how different people think and why empowers us all to lean into our strengths which helps us all better utilize different brain styles to reduce underemployment, isolation and shame AND maximize our collective potential. *Plus – its fun (More the merrier!)

Our plan is as Barb types, “to make the benefits of Neurodiversity as common as juice stains in minivans!”

But here is the thing – we wrote this book a little differently. There is a shocker!

Warning = This book is Zany and NOT PC

Because Barb does not speak but types one letter at a time. Her last book took her 10 years to peck out…this one took about 4 years. (Yea, a dramatic increase in speed – so we are going to have her drug tested.)

Of course some of that slowness is because her co-writer has a dyslexic and ADHD brain style. I don’t think my gayness (my wife diagnosed me with that) slowed us down a bit.

Although listing “The Gays” in the subtitle of this book, it did get us…kicked out of several libraries and organizations who happily promoted our last book which did not mention “The Gays”. We chose that irreverent, old timey slang “The Gays” – not to offend the LGBT community (or G, BLT community if you are a hungry, fast talking easily distracted dyslexic trying to remember what to say on camera..)

We used the term “The Gays” to introduce a different TONE – more playful tone in discussing these differences.

Its driving our fancy NY City publicists CRAZY! She said “The Gays” WHO says that? it sounds like some bigoted older person – PRECIECLY! That is our point.

You see, In 1974 the Diagnostic and Statistical Manual – the diagnostic bible for us psychologist and psychiatrists had homosexuality listed as a mental illness –and insurance agencies paid for REPAIRATIVE THERAPY. (Personally, I refused to have the straighten out therapy done because I did not want to start sucking at tennis and I LOVE comfortable shoes — and Jody Foster!)

It sounds ludicrous now to call homosexuality a PATHOLOGY. What changed? Major Scientific Break through? NOPE. “The Gays” kicked up a fuss.

We tried to make a funny book about serious topics to encourage people who would not normally read books written by Ph.D. types. The more of us who join the discussion – the more we disarm defensiveness, pity and “less than” perceptions and you – are – a pathology thinking.

Human excellence comes in all packages so we invite you to be yourself.

You are the most significant resource in being successful with your neurodivergence. Focus on your gifts – what we focus on grows. Spend more time developing areas were you excel.

As Barb types, “When enough of us embrace our purpose and being part of the solution – eventually justice prevails and discrimination bails.

My son Matt, who is a great thinker cleverly disguised in the body of the poor thinker, whilst he is easily overstimulated, the flip side of this hypersensorial state gives him the gift of being able to glance a page of text, process it, and comprehend it in a matter of seconds.

As I tell him frequently, how I would love that ability. His highly empathetic state means that he can sniff out out any hint of insincerity, no matter how well disguised. He knows if people truly believe in him. Those that do are rewarded with sharing a love of learning.

His current passion is political history, and this summer we have been studying Nelson Mandela, Ghandi, and the cold war. We have looked at his learning styles and a strong preference for listing to audio books and the like has emerged.

I love neurodiversity and Lois and Barb’s work celebrates and advocates for all. It is thought provoking, very funny, and refreshingly honest – no insincerity here.

Wishing you all the best to the launch with our love and best wishes Jane and Matt.

Jess:

So why am I neurodiversity’s greatest fan? How long do I have? A minute? Oh, jeez, we’d better get started.

Okay, so here’s the deal … when we stop insisting that there’s some gold standard way to think and experience and interact with the world, we free ourselves and our children from the constraints of conformity. And that’s huge, because while those constraints might be mildly uncomfortable for some, for others they are quite literally suffocating.

By embracing neurodiversity and respecting those whose neurology (or heck, anything fundamental about them, really) differs from the so-called norm, we not only provide access to them, but in so doing we RECEIVE access to their ideas and their innovation and their creativity and their passion. We get perspectives that are brilliantly different from our own.

People love to lament the so-called restricted interests of autistics, but God, do you know how much you learn about a single subject when that single subject is the only thing to which you devote your time for YEARS?

It’s really an incredible thing. While NTs are so often an inch deep and a mile wide in our knowledge of the world, some of our autistic friends are digging their hands deep into the fertile soil of a subject that sometimes no one else even noticed was worthy of pursuit. And yet, rather than celebrate and harness that incredible vehicle for individual expertise in a particular subject area, we pathologize it as yet another symptom of the condition.

But when we stop viewing people as sets of behaviors and rather as multi-faceted, three-dimensional human beings, we begin to make space for one another. And when we welcome everyone to the proverbial table, we allow for growth and evolution, both personally and communally.

And we create so many opportunities – so many different roads to success for EVERYONE!

When we stop insisting that our fellow humans meet some arbitrary set of requirements in order to be considered competent, we start TRULY presuming every human being worthy of whatever accommodations they may need to learn, to grow, to evolve, to reach their full potential.

When we truly embrace neurodiversity, no one gets left behind. Everyone is seen and supported and thus able to contribute in their own way, in their own language, using their own unique and beautiful operating systems.

So, yeah, that. That’s why I’d follow neurodiversity on tour if like, that were a thing. So there ya have it, friends, and I don’t want to brag here, but I think I might even have a few seconds left on the clock so I’m going to use them to wish my dears Barb and Lois nothing but the best with the new book. Keep setting hearts and minds afire, ladies.

Barb:

I have a lot of fears. I have a lot of stuff: Autism, Echolalia, Cellulite, Psoriasis, Good Hair (What? Folk should know), Ataxia, Apraxia, One-eyed-cave fish quality vision, and Purpose. That last one is key and I think is the Golden mean. When you remember your purpose, you are able to use your stuff to know and do, like the old joke, “Knowledge is knowing a tomato is a fruit: wisdom is not putting it in a fruit salad.”

I leave autism on a work visa to know more of the grand design. I learned while struggling to peck out my last book that I am no longer content to spend my life conically in my autism, as symmetrically beautiful as it may be. I climb this inverted mountain not because it is there but because you are there and I reach out to know you and you me.

Although my mind has never been very popular, I intend to have the popular mind know our autistic perception – a world of detail that reveals the grand design. Autism is our prism, not our prison.

The danger in absorbing this book is that you may see everything differently. (Most see me as smarter and thinner already.) You risk the loss of your comfortable position, as noticing the tartan pattern of the universe, illuminates our undeniable clan connection.

My thoughts on differences are clear:

It is in our best interest to remember that we are all the same. People are flecks of God. Each God fragment dispersed through space/time has a slightly different shape. One shape is not superior to another. All are necessary to complete the perfect, infinite, God puzzle. To be proud that one “tolerates” diversity is ludicrous. The whole system is the sum of its parts. Be your part. Connect with other parts and the God puzzle is revealed.

{image is a visual depiction of inclusion, symbolized by a circle of paper dolls in a variety of colors, shapes, sizes and abilities. Borrowed from EduGlobal.}

It’s the first day of The Rest Of The Summer – the three weeks in between the end of Brooke’s summer program and the beginning of school. Our lives are in flux. I’m still out of work and frankly struggling mightily with my own lack of predictability and structure, no less Brooke’s.

I suggest a walk. I know, however, that if I say, “Let’s go for a walk,” the answer will be, “No, thank you; I’ll just stay here,” so I say, “Hey, want to go get Dunks for breakfast?”

My little ruse works. We are out the door by nine. That’s something.

As soon as we hit the main road, we see a girl from Brooke’s school walking toward us with her mom. The girl, J, breaks into a huge smile upon seeing Brooke and greets her warmly. “Brooke,” she says, “I heard you moved into our building!” Brooke says, “You did?”

J asks if she’s gone for a swim in the pool yet. Brooke says, “I think so,” and then breaks into a song that she learned from her friend, H. “Bah bah black sheep do you want to die? No sir, so sir, keep me alive.”

I blanch, knowing that without the context that’s far too lengthy to explain, the song sounds, well … really, really wrong. “Brooke, honey,” I say, “they don’t know what that song means.”

Giggling, she looks at J and says, “Do you want to sing it with me?” To my surprise and delight, J says, “Sure,” and sings along to a second run-through of the song.

“I’ll have to call my friend,” I say to the mom, “and tell her to thank her son for teaching us that delightful little ditty.” She smiles.

Brooke and I say our goodbyes and walk toward Dunks. “What a nice girl,” I say to her. “It was kind of awesome that she did your scripts with you, wasn’t it? Not every kid does that.”

“Yeah,” she says, brightly.

We keep walking.

**

The moment we step into Dunks, I see her at the counter. Brooke does too, but she’s obviously not sure how to make her approach. After circling her a few times, she points a finger at the end of an outstretched arm and says, “Look who it is!”

I tell her that I see who it is, and suggest that she comes around to say hello. Instead, she pokes her head in front of her favorite school receptionist, and simultaneously (and LOUDLY) they both say, “THAAAAAAAT’S IT, SO HAVE A GREAT DAY!”

On impulse, I hug her. I would never hug her at school, but here, at the counter at the local Dunks, I can’t help myself. She hugs me back and whispers in my ear, “I just love our girl.”

Brooke starts in again, and Mrs. H is right there with her. People are looking at them as they say it again: “THAAAAAAAT’S IT, SO HAVE A GREAT DAY!” The guy in line behind me looks annoyed. Since we’re not holding anything up, I decide I don’t really care. My kid is in heaven.

Every single day during the school year, Brooke goes down to the main office to find Mrs. H so that they can do their thing together. It’s what they do. It’s how they connect. It’s one more adult, one more space, one more point of interaction and safety and predictability – one more person who gets – and loves -‘our girl.’

For good measure, they do it one more time. “THAAAAAAAT’S IT, SO HAVE A GREAT DAY!” before Mrs. H heads off. Brooke is all smiles.

I have argued for Inclusion for a long time. The word means a lot of different things. Brooke is technically not in an ‘inclusive’ setting in school. Her program is, by definition, a substantially separate classroom. For her, that IS the least restrictive environment in which it is possible to effectively access the curricula – both social / emotional and academic. But she is not separated from her peers.

The program is part of the school in which it’s housed. Its presence is not just geographical, but ideological. She is in a small homeroom with kids from outside her program – the same kids for all three years at the school, so they have a real opportunity to get to know one another. She has support in Chorus and Art and P.E. and Health so that she can participate in all of them with the general population. Right there in her IEP under Additional Comments is the sentence that I added and that I have insisted carry over every year. The one that says it all:

Above and beyond the extended day support provided in the service grid, Brooke will have 1:1 support for all extra curricular activities in which she opts to participate, including but not limited to all clubs, concerts, shows and musicals.

While she is in a program that gives her what she needs, she is part of the life of the school. And it shows. Not just from September to June, but in the middle of August, on a walk to Dunks.

I am so grateful for your love and support for my girl yesterday. I tried to read all of your comments – all 741 of them as of this morning – but eventually it was just more than I could manage, both logistically and emotionally.

I agree whole-heartedly with so much of what you said, first and foremost that as parents we need to not just talk to our kids about acceptance but model it. I was particularly touched by the Muslim mom who pointed out the hypocrisy of so many non-Muslim parents who kick and scream for acceptance for their autistic or otherwise disabled or different kids and then ostracize her son because of his religion. If we are outraged by what we are perpetrating only when it lands on our own laps, we are desperately missing the mark.

But there was something else in the comments. Something that I saw time and time again. I had begun to respond to it, to try to explain, but I eventually ran out of gas and had to simply scroll by with a mental note to address it later. It was this: many of you, undoubtedly trying to protect me from hurt, which I appreciate, assured me that the ‘good’ part of this was that Brooke didn’t know what was happening. That she was, as some said, “blissfully unaware of the cruelty of those girls.”

I love you for what I know are the good intentions behind that sentiment, but respectfully, I’m calling complete and utter bullsh-t.

I talk ad nauseam about how important it is to presume competence. This, my friends, is where the rubber meets the road. To suddenly assume that she doesn’t get it, doesn’t see what’s happening, isn’t taking in the cruelty, the mockery, the exclusion, the hurt just because it’s painful to contemplate the alternative is doing her a grave disservice.

Years ago, I wrote about an incident in which a little boy was teasing her at a birthday party.

The kids were happily crammed into a crowded table at their classmate’s birthday party. They were carefully painting their plaster sculptures, chattering and bustling, sharing paints and cups of water for cleaning brushes.

Brooke was hard at work painting her plaster clown. From the looks of it, not a single color on the palate had escaped her brush.

From a couple of seats away, Katie glanced down at her sister and called out encouragement. “Brooke, you’re doing a great job!”

A little boy across the table from Brooke chimed in.

“Yeah, you’re doing a great job making a mess, Brooke. Nice mess. What a great job. You’re just dumb.”

He barely finished the last sentence before Katie angrily shot back.

“Stop making fun of my sister.”

“But she doesn’t even pay attention,” he said. “Watch this.”

He looked right at my baby girl, diligently painting her project and he shouted, “Hey Brooke, DOYNG!”

She didn’t flinch. She kept painting.

“See?” he said, looking around the table at his captive audience. He looked smug, having proven his point. “She doesn’t even pay attention.”

I took a step closer, but a clear, determined voice from across the table stopped me in my tracks. I know that voice better than I know my own, but there was an anger in it that I didn’t recognize.

“STOP IT!” said the voice. “STOP MAKING FUN OF MY SISTER.”

“She doesn’t even know,” the little boy said flippantly.

She was six when that happened, SIX when I said:

He may be right; she may not know. She may not understand. I’m not convinced. She sees so much more than we think she does. But even if she doesn’t know now, she will. Then what?

Can I protect her from the sting of ignorance?

She’s thirteen now, and I can say, unequivocally, that she sees EVERYTHING. That she takes in everything around her like a non-stop camera, recording it and stowing it away for processing, if not in the moment, then when she’s ready – in her time, in her way. There is nothing – NOTHING – that she does not see, hear, and file away.

In the moment, it’s easy to argue that she’s “blissfully unaware.” It’s easy to convince ourselves that because she’s not reacting in the way that we might expect a neurotypical person to react to the situation, that she’s not watching it unfold. It’s easy to build a tower of evidence that she’s “in her own world” – scripting, laughing, behaving exactly as she was before it happened.

But she’s not neurotypical. Her brain doesn’t work the same way that mine does or yours might. It works the way HERS does. She reacts the way SHE does. And when we start to apply all of our knowledge of HER brain and HER reactions, that tower of evidence comes crumbling down.

My daughter has come to me YEARS after things have happened, things she never mentioned before, things I’d been convinced had simply rolled over her head, to talk about them, to dissect them, to get help in understanding them, or, even more often, to offer insight into them.

In 2014, I wrote:

[I]t doesn’t mean assuming that she understands all of this right now. What I am assuming is that she’s taking it all in, absorbing it, holding onto it in her steel trap of a brain until the time comes when she’s amassed all the tools that she needs to peel back the stored layers and extract her truth.

I’m presuming that even if she’s not yet ready to connect all the dots now, she is capable of learning, growing, evolving, tool-collecting and ultimately layer-peeling – in her time and in her way. That, to me, is what presuming competence is about.

About ten minutes after the incident yesterday, once we knew that Becky would be along later, Brooke all but demanded that we leave the pool immediately. It was only 11:30, far earlier than she would normally eat, but she began pleading for lunch. She might not have known exactly what was wrong, but she sure as heck knew that something wasn’t right.

As we made our way back up to the apartment, I said, “Brooke, honey, those girls in the pool weren’t being very nice to you.”

I explained that they had been teasing her. That it wasn’t about her, really, but about their need to feel better about themselves by being mean to someone else. That I’d rather have a friend like her than a pretend friend like them any day of the week.

Throughout the conversation, she continued to repeat scripted lines that at least appeared to be wholly unrelated to what I was saying. I indulged them, responding in kind before returning to what I was saying. Again, to the uninformed observer, it might have looked as though she wasn’t listening.

When we got to our door she asked, “Why were they mean?”

I circled back and repeated my earlier explanation. Her response was, “Want some SARDINES?” It’s a line from Oswald and the way she says it is purposefully hilarious. She waited for me so that we could answer, “Nnnnnnnnnno, thank you!” in unison. She had no further questions about the girls, so I dropped it.

Back in April, we talked to Brooke’s neurologist about a particular seizure detecting technology for her bed. “It’s not reliable,” he had said, ” so it might help you sleep through the night, but it won’t actually make her any safer.” Those were the words echoing in my head yesterday as I made the decision to talk to Brooke about what had happened at the pool.

It might make me feel better to pretend that she doesn’t get it, but doing so doesn’t help her. It doesn’t arm her with the tools she will need when she encounters people like those girls or the boy at the party or far worse: those who want to manipulate her, coerce her, or do her harm. It doesn’t equip her to deal with the real-life situations that she will need to navigate as she gets older. It doesn’t teach her to listen to her gut when something feels off – or to recognize that it should.

It might help me sleep through the night, but it doesn’t make her any safer.

Yes, my friends, I talk ad nauseam about how important it is to presume competence and this, right here, is where the rubber meets the road.

]]>https://adiaryofamom.com/2016/07/25/of-bullies-and-the-presumption-of-competence/feed/19jessout of many, 1https://adiaryofamom.com/2016/07/21/out-of-many-1/
https://adiaryofamom.com/2016/07/21/out-of-many-1/#commentsThu, 21 Jul 2016 14:14:03 +0000http://adiaryofamom.com/?p=24943Continue reading →]]>Last night, Brooke and I stopped into a Russian market about a half a mile from home. I’ve passed the place a thousand times, yet never had any particular interest in going in. But we needed some produce for dinner, traffic was terrible, and, well, there it was, so I figured we’d give it a shot.

When we got home, I texted my dad:

It was AMAZING. It’s so funny because on the one hand it feels entirely foreign, especially given that the Russian on all the packaging doesn’t even share our alphabet, but on the other hand, it’s so familiar!

We walked by rows of cheese and fruit blintzes, all different kinds of pierogis, a huge assortment of smoked fishes and chopped salads of whitefish and herring … and then the baked goods! – pumpernickel breads and flour top rolls and trays upon trays of pastries: elephant ears and babka and apricot bread!

It’s funny how much our heritage, as distant as it might have felt, really did thread itself through my childhood. Thank you for that

He wrote back to ask of they had Russian coffee cake or ‘shave,’ the cold cabbage soup that he remembered eating in the hot weather as a child. He didn’t like it, he said, but he wanted to know. I had to laugh. I hated the borscht that was always in our fridge growing up, but seeing it had nonetheless tugged me back to my childhood with a smile. I promised him I’d look next time we went.

After dinner (which was followed by an elephant ear for dessert), I saw a post from Kristin Chalmers, the brilliant photographer behind the awesome (and rapidly growing!) project, Out of Many, 1, in which my girls recently had the honor of participating.

In the post, Kristin explained that she was inspired to showcase the diversity of our American family because, “(I)n America, there is NO WAY you can figure out what someone’s genetic heritage is just by looking at them because there is no one way to look American.”

With the glaring and important exception of the Native American people, the overwhelming majority of us in this country came from somewhere else. Our immigrant heritage, our wildly varied tapestry of race, ethnicity and cultural backgrounds, has long been one of our greatest sources of strength.

We are the Mother of Exiles described by Emma Lazarus in the New Colossus, the poem – the reminder! – etched into the Statue of Liberty. We light a beacon offering our world-wide welcome to the tired, the poor, the huddled masses. That’s not just what we stand for, it’s quite literally who we are. This proud republic is a collective of the wretched, the tempest-tost, the tired, the poor, the homeless who once and still yearned to breathe free. And now here upon the shore, we flip our wrists from upturned hand to one outstretched to welcome those who come after. That is what we do because that is who we are.

Together, we make a glorious American quilt, sewn together panel by colorful panel, story by triumphant story, and all the more beautiful because threaded throughout, in brilliantly stitched patterns of food and music and language and family, are our individual histories.

We are America. And in Kristin’s work, it’s all right there on our faces.

{image is a photo montage of children’s faces from Out of Many, 1. Katie and Brooke are in the middle row, 5th and 7th from the left. Click on the photo to learn more about how you can support and / or participate in the project.}

]]>https://adiaryofamom.com/2016/07/21/out-of-many-1/feed/5jessOut-of-Many-1-First-Grid-Kristin-Chalmers-Photography_0001three remaining fingershttps://adiaryofamom.com/2016/06/14/three-remaining-fingers/
https://adiaryofamom.com/2016/06/14/three-remaining-fingers/#commentsTue, 14 Jun 2016 17:21:37 +0000http://adiaryofamom.com/?p=24717Continue reading →]]>We all knew it would happen. The moment we heard the sickening news – that a crazed gunman had opened fire in a gay nightclub in Orlando, killing 49 innocent human beings and wounding yet another 53, we knew what would come next.

Within minutes, there were fingers pointed in every direction. Everywhere, that is, but at ourselves.

It’s so much easier to create a boogie man who lives across an ocean than to face the very real fact that hate lives, breathes, flourishes HERE.

When forced to accept that the perpetrator of this horror was indeed one of us, an American born and bred, we immediately carved out a portion of the population in order to insulate ourselves from blame. There are so many ways to draw the lines – he was of Afghani decent (no matter that he was born on American soil), he must have been radicalized (despite all evidence to the contrary), his faith, we say, while practiced peacefully by 99.9% of its followers, is one so easily perverted into a weapon of intolerance and violence (as are they all).

In his 911 call, the shooter pledged allegiance to ISIS, we are told. We ignore the fact that he called the Boston bombers his “homeboys” and, according to FBI records, had also claimed membership in Hezbollah, as bitter an enemy of ISIS as any other. His rantings made no sense. The FBI has found no evidence that this was a coordinated act.

But it doesn’t matter if he was actually connected to anyone or anything, right? It doesn’t matter … as long as we can say that he’s not one of “us.”

Those people, I heard again and again this weekend – those people will not tolerate anyone whose beliefs differ from their own.

Fear of any THEM hurts every US, I wrote in response.

There is an old adage that I find so poignant in its simple truth: “Every time you point a finger in scorn, there are three remaining fingers pointing right back at you.”

Every single time that I have posted anything here about the LGBTQ community, I have had to delete bigoted, toxic comments. Every. Single. Time. I’ve been called sick. I’ve been told I am an abomination. I’ve been told that Diary is a hateful, intolerant place because I insist on celebrating ‘perverted’ love.

We (yes, “us”) thrive on fear. We feed it to our children and we lap it up like pigs at the trough, buying into the hideous and dangerous premise that one love can somehow denigrate the sanctity of another, that one union could possibly dilute the gravity of another. We weave fairytales in which the victims are the ogres, in which those who for so long have feared for their own safety are painted into violent, villainous creatures that they never were, never would be, because US and THEM excites the electorate, because hellfire and damnation brings them into the Sunday pews.

In 2011, I wrote,

What confounds me the most is that it so often happens in the name of religion. We see it all the time. As far as I’m concerned, intolerance in the name of Christianity is so far perverted from the teachings of Jesus that it would be wholly unrecognizable to Him. For the life of me, I simply don’t get it.

I truly believe – from the bottom of my heart – that the only thing that can be perverse about love between two consenting adults is someone outside of it having the audacity to stand in judgement of it. That to me is perverse.

And yet still it happens. In our churches, our schools, our halls of government and seats of power. In the name of “religious freedom,” we allow queer kids to grow up knowing that coming out, living their truth, being who they are exactly as they were beautifully and perfectly made, might very well be risking their lives. At the very least we tell them that they can be fired from their jobs, evicted from their homes, refused service, and when it happens the victims will be those who did the firing, evicting, and refusing. We even tell them to hold their water, because, damn it, they have no right to urinate outside their own homes.

And yet, when they are targeted, maimed and murdered in a tragedy that is finally too big to ignore, we clutch our pearls and shout, “J’accuse!” at someone else – some other version of our intolerance, some other religion than our own, something, anything that is OTHER than us.

Seven months ago, three presidential candidates, Ted Cruz, Mike Huckabee, and Bobby Jindal, spoke at the National Religious Liberties Conference. They were introduced by Pastor Kevin Swanson, who said this …

“Yes, Leviticus 20:13 calls for the death penalty for homosexuals!” he says as he paces the stage holding the bible above his head. “Yes, Romans Chapter 1 Verse 32 the Apostle Paul does say that homosexuals are worthy of death.”

He then begins to shout.

“HIS WORDS NOT MINE AND I AM NOT ASHAMED OF THE GOSPEL OF JESUS CHRIST AND I AM NOT ASHAMED OF THE TRUTH OF THE WORD OF GOD.”

We cannot stand by and watch that, followed by this …

Ted Cruz shaking hands with Pastor Swanson as the latter introduces him to the crowd

… or any of the thousand more examples of institutionalized discrimination, bigotry, and fear that our LGBTQ family faces every single day and continue to say that it’s only “those people” who will not tolerate anyone whose beliefs differ from their own.

We can point our fingers all we want, but we can’t in good conscience keep ignoring the three fingers pointed back at us.

Editor’s note: This post is not a criticism of either religion or faith. It IS, however, a strong condemnation of either used as justification for bigotry, intolerance, and hate.

Four years ago, I wrote a post about an event that had changed my life. I wrote it because I felt compelled to do so. Because, given what was happening at the time, I felt that my continued silence would make me actively complicit in perpetuating the culture that had allowed it to happen in the first place … and that had secured my secrecy for as long as it had.

It was a hard post to write, but it was no harder than living with the reverberations of what had happened 23 years earlier. Writing it, saying it out loud after all of that time, wasn’t, truth be told, cleansing nor healing as one might imagine, but it was necessary.

Four years later, it’s necessary again.

Last Thursday, a young man who was facing ten years in jail following his conviction on three counts of sexual assault after being caught in the act of penetrating an unconscious woman was sentenced to six months in jail. I know that was an awkward sentence to read. I didn’t want to make it any easier. Because it was torturous to write.

The crime happened around 1 a.m. on Jan. 18, 2015, when two graduate students riding bikes on Lomita Court came across Turner lying on top of a partially clothed unconscious woman in a field near the campus fraternity houses.

The older students tackled Turner, then a 19-year-old freshman, after he attempted to run, then called police. The woman, who was not a student, was treated at a hospital.

Turner, who withdrew from school Jan. 27, 2015, told police after he was arrested that he had seven cans of beer that night and thought he was having consensual sex with the woman, who authorities said was “completely unresponsive” as she lay near a tree and a trash bin.

Four years ago, I wrote the following:

There is no word in the English language less in need of a modifier, nor less capable of being modified, than rape. There is no mitigating the violation of the human body and all that comes with it.

It’s odd what I remember all these years later. It’s not the physical pain. It’s not the begging for him to stop. It’s not the tears nor the shock that followed.

It’s the ground. The dark, damp asphalt. And the bricks in the wall. And the smell of the dumpster just feet away.

But more than anything else, what has haunted me this week has been an image of something that I couldn’t actually see at the time. A picture that I’ve created in my mind over time. From a different perspective. One outside myself. Watching it happen.

While the dumpster may seem an eerily common thread in our stories, it is the wrenching away of choice that truly unites us. It is the aftermath of violence that we share – and that we will share for the rest of our lives. It is the sense-memories that come flooding back at all the wrong times. It is the terror that strikes unbidden, unwanted, indiscriminately. It is the shame that no matter how hard we fight to resist, others continue to assign to us: unwarranted, unearned, but nonetheless internalized.

In justifying the six-month sentence he handed down last week, Judge Aaron Persky said positive character references written on Turner’s behalf, such as that given by his father, were a factor.

The character reference he cited? It went like this:

“[Brock’s] life will never be the one he dreamed about and worked so hard to achieve. That is a steep price to pay for 20 minutes of action out of his 20 plus years of life.”

I never thought about how much time it took for my rapist to do what he did. Alas, there was no clock, no stopwatch, no timer that might have told me how long it took for him to hold me down, to ignore my pleas to stop, to take by force my autonomy, my safety, my choice.

It never struck me that there might be some sort of mathematical formula by which one could determine the depth and breadth of not just the physical, but the emotional scars he left vis-a-vis the length of time that it took to happen. (There wasn’t. There isn’t. There never could be.)

A steep price to pay for 20 minutes of action, he said.

There is indeed a steep price to pay. It’s the one that his victim will be paying for the rest of her life for a crime she did not commit, over which she had no control, nor, even, at the time, knowledge.

She was unconscious.

Completely unresponsive.

In a letter that I implore you to read in its entirety, this brave young woman addressed the court, responded directly to her attacker, and in so doing, spoke to all of us.

You are the cause,” she wrote, “I am the effect. You have dragged me through this hell with you, dipped me back into that night again and again. You knocked down both our towers, I collapsed at the same time you did. Your damage was concrete; stripped of titles, degrees, enrollment. My damage was internal, unseen, I carry it with me. You took away my worth, my privacy, my energy, my time, my safety, my intimacy, my confidence, my own voice, until today.

Until we collectively stand up – each and every one of us – and say en masse, “Enough,” until, as parents and teachers and coaches and mentors and friends, we teach ALL of our children what it means to consent and to have consent, until we demand accountability and responsibility from them and from each other, the only thing that will change are the names in the next story.

Please, talk to your children. No matter their challenges, presume them competent and capable of receiving the message. Find a way to make the information accessible to them. Use their favorite characters. Be creative. Ask teachers for help. Do what you must to ensure that they understand. Trust that if they don’t yet, they will. Keep at it.

Explain early and often that their bodies are their own and that no one has the right to take what they do not comfortably and willingly give nor do they have the right to do anything to or with another human being without their clear and express consent.

Shame made me complicit for too long.

It’s time (again, still) to speak up.

Note: If you haven’t watched the video below, I highly recommend it, especially as a primer for kids. It’s a wonderful, not remotely embarrassing illustration of consent.

]]>https://adiaryofamom.com/2016/06/06/twenty-minutes/feed/13jesshappyhttps://adiaryofamom.com/2016/05/25/happy-2/
https://adiaryofamom.com/2016/05/25/happy-2/#commentsWed, 25 May 2016 17:01:11 +0000http://adiaryofamom.com/?p=24445Continue reading →]]>When Brooke was three, we enrolled her in the preschool that her sister had been attending for the last two years. We loved it and were excited for her to join her big sister.

The school, located in the basement of a local church, was as cute as they come and, to me, was exactly what preschool was ‘supposed’ to be. It was a family operation – run by two sisters and their mother, all of whom had clearly found their calling. They loved the kids as much as the kids so obviously loved them. But as I would soon learn, my version of what things were ‘supposed’ to be was very often radically different from what my daughter actually needed.

While they adored her, and she them, they just couldn’t provide the kind of environment that she so desperately needed at the time. Despite the fact that we’d found the perfect place for her, we all cried the day that we told them that we were leaving.

On Brooke’s last day, they presented her with a scrapbook containing photos of her with various teachers and classmates. They made sure to capture her at her favorite activities: sitting in the sand box and peeling felt from the felt board. In the last photo, her classmates are waving goodbye and the text reads, “We’ll miss you very much!”

Ten years later, Brooke reads through the scrapbook almost daily. Her mind, steel trap that it is, has never forgotten those people who loved her so many years ago.

And yet, as sweet as all of it is, I have always struggled with looking at the scrapbook with her. It wasn’t an easy time for us, nor, more importantly, for her. She spent so much time frustrated by her inability to be understood and overwhelmed by the world’s sensory onslaught. Even though she spoke, the effort to create a narrative with only previously memorized chunks of cartoon dialogue and books was enormous. Especially when it was nearly always in vain. I knew she’d stopped trying when one of the room mothers asked me, after spending an enormous amount of time in the classroom, if she had ever spoken at all.

But above all, I found it difficult because my sweet, beautiful girl just looked so different in the photos. What I saw in her face, or didn’t see, made my heart ache for her.

Last night, everything changed. For the millionth time, once I was able to recognize the fact that I was making assumptions based on my own experiences, I was able to follow my daughter’s lead and break open what I thought I saw, what I thought I knew.

{image is a photo of Brooke between the two wonderful ladies who ran the school.}

All because I asked a question. One that she couldn’t have answered back then, nor even a couple of years ago, but one she can answer now:

Honey, how did you feel when that picture was taken?

I never would have asked before. Not just because I didn’t think she could answer, but because I thought I knew the answer.

Scared, sad, overwhelmed, lost, unengaged. Those were the words that I had assigned to her expression, to her body language, to what I thought I saw.

“Happy,” she said.

I was stunned. “Happy?” I asked. “Really?”

“Yup,” she said, “and that was why they loved me so much and because they’d miss me very much.”

(Brooke often uses “that was why”for “because.”)

She was happy because she knew she was loved.

{image is a photo of Brooke with her classroom teacher. Her expression is the same.}

As we turned the pages, I asked the same question. “How did you feel when that picture was taken?” At each and every shot, she said, “Happy.”

{image is a photo of Brooke posed with her classmates. They are smiling and animated. She has her hand up to her mouth and, through my neurotypical filter, looks either sad or afraid or both.}

“I loved Halloween!” she said when we got to the page where the kids were showing off their homemade Halloween hats. I pointed to the picture. “You loved THIS?” I asked.

{image is a photo of Brooke posed for a picture with her classmates. They are wearing Halloween hats and smiling. Her face looks almost expressionless.}

“Yup!” she shouted. “But snack time was my favorite!”

I turned the page. There she was at the snack table with the other kids.

{image is a photo of Brooke at the table eating her snack with the other kids. Her hands are up at her chest.}

She lifted her hands to her chest, mimicking her pose in the photo. Until that moment, I’d never noticed where her hands were in the picture. It just wasn’t part of the data that my brain had collected. I’d looked only at her face.

“My hands were like this,” she said, now bouncing them just beneath her chin, “and that was why I was happy.”

(see above: why = because)

It hurt to look at those pictures because I’d been viewing them through a neurotypical filter. I’d been making assumptions about my kid’s demeanor and behavior based upon what I thought they were ‘supposed’ to be. That was about as useful as choosing a preschool based on what I thought one was ‘supposed’ to look like.

When it comes to autistic individuals, try to refrain from assigning motive and meaning to behavior based on what the behavior would mean were you engaged in it.

Just a few days after reading that, there I was, doing exactly that until my kid snapped me out of it.

Brooke doesn’t just experience the world differently than I do, she expresses her experience of it differently as well. While I thought I got that, clearly this mama needed a reminder.

]]>https://adiaryofamom.com/2016/05/25/happy-2/feed/8FullSizeRender-22jessFullSizeRender-23FullSizeRender-22FullSizeRender-26FullSizeRender-25FullSizeRender-24the courage to listen https://adiaryofamom.com/2016/04/25/the-courage-to-listen/
https://adiaryofamom.com/2016/04/25/the-courage-to-listen/#commentsMon, 25 Apr 2016 11:45:24 +0000http://adiaryofamom.com/?p=24347Continue reading →]]>There’s something that tends to happen an awful lot in advocacy circles (and everywhere, really, but it’s most obvious there) and I was hoping we could talk about it. It tends to go something like this:

Someone, typically a member of a radically disenfranchised community (let’s call them A) says, “Doing X, no matter how well-intended, hurts us and our community.”

Someone else, who is almost never a member of said community but is somehow related to someone who is (let’s call them B) says, “But we do X to HELP you and the community.”

And A says, “Okay, but it’s not actually helpful. In reality, it’s hurtful. Here’s a detailed explanation of why the action in question is hurtful and a map of its consequences as they’ve played out in my life-long experience as a member of this community …”

And B says, “How dare you cast aspersions on my good intentions. I love [my kid / my students / my patients / my third cousin once removed’s kid …] and I would never do anything to hurt them.”

So A says, “What I’m trying to explain is that you ARE hurting them (and, depending on what it is that we’re discussing, quite possibly, by extension, all of us.) I didn’t say that you didn’t care. I said that the action you’re taking is hurtful.”

And B says, “You know nothing about me or who I am,” which seems to make perfect sense to them in the context of the conversation but really, well, doesn’t.

So A says, “This isn’t about you. It’s about the action you’re taking which, purposefully or not, is hurtful.”

And B says, “You have no right to tell me what to do.”

And on it goes.

You get the idea, right?

I watch these conversations happen – and devolve – regularly. And they are as intimately familiar as they are frustrating. Because I spent years being B. Being the one crouched in that defensive stance saying, “But you don’t know me.” Years missing the point.

It took me a while to get that it really, truly wasn’t about me. That being told that something that I said or did was hurtful was not the same as being told that I wasn’t trying, didn’t care, or was simply a crap parent. It just meant exactly what was being said: that something that I was doing was inadvertently hurting someone.

Intention simply wasn’t part of the conversation, nor did it need to be. What I had meant to do or thought I was doing were never the point.

I was being given an opportunity to examine the actual or likely consequences (intended or not) of my actions. That’s a hell of a gift to squander just because it doesn’t come wrapped in a delicately tied, ego-soothing bow.

In a recent conversation on Diary’s Facebook page, I used the following analogy. I think it does a decent job of illustrating all of this.

I love my kid with all my heart. I am a pretty good person. I’d do anything for my kids.

So let’s say that my daughter gets a really, really bad sunburn. I, with all of my good intentions and love for my kid, run out and get a bottle that reads “soothing sunburn spray.”
I run home and spray it on her sunburn and she screams and cries that it’s not soothing at all, that it actually stings like heck and it’s making it worse.

Should I keep spraying and tell her that she’s making me feel really badly because I was only trying to help? Should I insist that it doesn’t really hurt her because it says right there in the bottle that it’s soothing? Should I insist that she stop yelling and accept my loving gesture because that’s what it is?

Or should I put the bottle down and stop doing the thing that she’s telling me is hurting her long before worrying about how the disconnect between my intentions and their consequences make ME feel?

When a member of the community being hurt by what was intended as kindness says, “This hurts us,” shouting, “But it’s meant to be kind!” is not particularly helpful.

This is messy stuff. I know. Intimately, I know. It’s crushing and frustrating and heartbreaking and yes, even angry-making to hear that what we’re doing out of love and concern might actually be making things even harder for the people we love with everything we are and everything we have.

But if we keep allowing our egos to stand in the way of our ears, we’ll just keep inadvertently hurting the very people whom we so desperately want to help.

{image is the word “PROM” spelled out in a delightfully cheesy balloon arch. I kinda love it.}

So apparently we’re in the height of prom season. One might be forgiven for thinking that prom season would be in May or June when most proms are typically held, but in a country where we start decorating for Christmas three days after Halloween, I suppose it follows that prom season starts in April.

Besides, now that the word promposal – and all of the over the top absurdity that it represents – has entered our lexicon, the goal of asking a fellow high schooler to a school dance has become to create a scenario so extravagant that it makes it into HuffPost. The game has clearly changed.

And with the new game comes the onslaught of “feel-good” stories in which well-meaning, non-disabled kids invite disabled friends to prom and the news heaps praise on them for invitations that the media seem to assume we all agree are – can only be – charitable.

I have no doubt that in many, if not most, of these stories the act of inviting a friend, disabled or otherwise, to prom is just that. It’s not, by any stretch, some grand act of charity. It’s not done for pats on the head; it’s done because these kids know they’ll have a good time with the person they’re inviting. Many of the kids even go out of their way to say that, but it does little to deter the more fervent head patters.

To be clear, an invitation to prom is not the problem. The way that theses stories are presented is.

The formula is consistent. There’s the popular hero (or heroine) upon whom the story is focused. We hear all about how wonderful they are. About how they could have gone to prom with anyone. About where they plan to go to college. About how well-liked they are and about all of the activities in which they participate.

The other kid? Is incidental. One-dimensional. An afterthought. Worse, a prop.

Just for “fun” I Googled the words disabled prom story just now and, among 815,000 hits, one of the top three stories read, Feel Good Story: A Prom Date They’ll Never Forget. I opened it.

It’s an article about a girl named M. She sounds lovely. We hear a lot about her. About the sports she plays and the particular event within that sport (and how she made the state finals!), about where she plans to go to college, about what she will study and about what she hopes to be when she grows up. We hear about her last two proms and why she decided that she wanted to take one of “the special ed boys” to this one. We hear about how she befriended them and how she got angry when her friends called them “those weird kids.” We hear about her dress. Once you get past the way in which her quotes are presented, she seems like a great kid.

We hear from a school staff member who tells us that she cried when she saw the proposal, live and in person.

We hear nothing from J. The article says that “the school didn’t release his last name.” I suppose reporters have no other way to find out someone’s name than to through the school. Like perhaps asking him? They didn’t. So we know nothing about him. Not a quote, not a single personal detail. Nothing.

Every story is similar. Every one of them is about the person doing the asking and how great it is that they, as it was worded in one article I read this morning, “don’t mind” their date’s disability.

Last year, I wrote the following:

I saw a story on HuffPost yesterday. One of those feel good pieces in the Good News section. Yeah, that’s a thing. Cause let’s be honest, there isn’t much good news in “the news.” So I get it, and I appreciate the concept.

Underneath a news video packaged around the recording of said worker feeding said customer is the following text:

Faith in humanity, restored.

A worker in a Qdoba fast food restaurant in Louisville, Kentucky was caught on video feeding a customer who was unable to feed herself.

Ridge Quarles told WAVE 3, the local NBC station, that the customer was a regular who traveled to the restaurant via a bus used by people with disabilities.

He told the station:

I had helped her through [the] line and sat her out in the lobby, got her a drink, got her utensils and napkin and kind of started to walk off and I was like, “Is there anything else I can help you with?” and she turned around and she was like, “Sir, if you don’t mind could you help me eat?”
The footage was captured several weeks ago by customer David Jones, who had helped the woman to enter the store.

“He didn’t stop to think about, ‘Well, should I help her, should I not,’ he just went over, put the gloves on and started feeding her,” Jones told WAVE 3.

Jones said he filmed the moment to show his friends “there’s still some good people in the world.”

I think it’s nice that this young man went the extra mile for a customer who was, thankfully, able to ask for the help that she needed. I’m not sure that the fact that he didn’t refuse her request is enough to restore my faith in humanity, as it did for the author of the article, but it’s certainly, well, nice. I’d imagine that the woman whom he helped thought it was nice too. But imagining is all that I can do, because, as far as I can tell, no one asked her.

I wonder what her name is.

I wonder how she feels about being videotaped while eating – while needing to be fed. I wonder how she feels about that video being shared online and subsequently put on television without her consent. I wonder if anyone, anywhere along the line, thought that perhaps they should consult her.

She’s a regular at the restaurant. According to the reporter, she patronizes the place enough that they know how she gets there, what she orders for lunch, what she prefers for dinner. Enough that the young man was able to imitate precisely what she said each time she came in.

But in the video, the reporter says, “we don’t know her name or her story.”

It wouldn’t have been hard to find her.

If they’d thought it was important.

But clearly, their story isn’t about her.

Even though it’s her story.

Once it was packaged for public consumption – for people who aren’t disabled, for those who will view it as an act of kindness to be passed on – it was no longer about her.

I think so often of that incredible Ted Talk that Stella Young left us with before she passed away. The one in which she said, “And these images,there are lots of them out there,they are what we call inspiration porn.” And the audience laughed because, well, porn is a funny word, I guess. And she said,

“I use the term porn deliberately,because they objectify one group of peoplefor the benefit of another group of people.So in this case, we’re objectifying disabled peoplefor the benefit of nondisabled people.The purpose of these imagesis to inspire you, to motivate you,so that we can look at themand think, “Well, however bad my life is,it could be worse.I could be that person.”

But what if you are that person?”

What if you ARE that person?

–

I wonder what her name is.

I wonder how she feels about being on TV.

I wish someone had thought to ask.

These stories are everywhere and it’s easy to get wrapped up in them. It’s even easier to share them. But before you do, I beseech you to ask yourself how it would feel to read them from the disabled person’s point of view. If you were the woman no one even bothered to interview. If you were the kid with no last name. If you were the one who no one could believe the cheerleader would ask to the prom. The one who no one reading those articles could ever think might end up being the actual girlfriend or boyfriend of their one-time, feel-good date.

How would it feel?

Stella asked, “What if you ARE that person?”

So what if you are?

]]>https://adiaryofamom.com/2016/04/22/inspiration-porn-goes-to-the-prom/feed/96204885jess6204885understanding our differenceshttps://adiaryofamom.com/2016/04/11/understanding-our-differences/
https://adiaryofamom.com/2016/04/11/understanding-our-differences/#commentsMon, 11 Apr 2016 11:07:20 +0000http://adiaryofamom.com/?p=24123Continue reading →]]>Yesterday, I was honored to step in for my friend Susan Senator and speak at a benefit for a wonderful organization called Understanding our Differences. UoD is a pioneer in disability education. Through a participatory curriculum for elementary schoolers, they live their mission of demystifying human differences, supporting inclusion, and building bridges to true and lasting friendships.

For me, the best part of the program is that while there are tons of non-disabled parent volunteers, the units are led by a person with the disability being covered. And that, I believe, is what it’s all about. So while I was thrilled to be a part of an event with some incredible folks yesterday, none, not even a local mayor, a superintendent of schools, nor even the dedicated folks who run the program, impressed me as much as the man who spoke right before me.

For five years now, Aaron Levinger has been standing up in front of groups of 50-60 elementary school kids at a time and talking to them about his experience as a person with Asperger’s. He’s been patiently answering their questions, some of which, he shared, are deeply insightful, some of which are the same as the one the last kid asked, and some of which are about the Red Sox. This is Boston, guys. We do love our baseball.

I never cease to be in awe of those who so willingly volunteer to make themselves vulnerable, to share their most personal challenges and intimate triumphs, all for the sake of creating a better world for our children. I was deeply honored to share the stage with Aaron yesterday.

When it was my turn to speak, this is what I said …

Years ago, when asked about my take on inclusion versus substantially separate education, I said the following:

We live in a district that prizes inclusion. And as a rule, I’m all for it. In my opinion, inclusion – educational, societal and damn near any kind you can think of – benefits everybody involved. BUT – big, huge, enormous BUT – ONLY IF IT’S DONE RIGHT. Otherwise, it can be pretty seriously damaging to everybody involved.

Inclusion doesn’t – can’t – mean throwing everyone in a room together and hoping for the best. In order to work, inclusion has to be thoughtfully designed. It must be painstakingly planned and executed. It must be FLEXIBLE and agile – constantly able to evolve and change as the needs and skills of those involved evolve and change. It must be a living, breathing organism and everyone, EVERYONE must be invested in making it work.

As parents, we often think of ‘everyone’ in the school system as every adult in the district. And while it’s true that we need teachers and administrators and secretaries and custodians to be on board, what we really need, above all, are the kids.

Seven years ago, I wrote about something that had happened at a birthday party to which Brooke,my autistic daughter, who was then in kindergarten, was invited along with her older sister, who was in second grade.

The kids were happily crammed into a crowded table at their classmate’s birthday party. They were carefully painting their plaster sculptures, chattering and bustling, sharing paints and cups of water for cleaning brushes.

Brooke was hard at work painting her plaster clown. From the looks of it, not a single color on the palate had escaped her brush.

From a couple of seats away, Katie glanced down at her sister and called out encouragement. “Brooke, you’re doing a great job!”

A little boy across the table from Brooke chimed in.

“Yeah, you’re doing a great job making a mess, Brooke. Nice mess. What a great job. You’re just dumb.”

He barely finished the last sentence before Katie angrily shot back.

“Stop making fun of my sister.”

“But she doesn’t even pay attention,” he said. “Watch this.”

He looked right at my baby girl, diligently painting her project and he shouted, “Hey Brooke, DOYNG!”

She didn’t flinch. She kept painting.

“See?” he said, looking around the table at his captive audience. He looked smug, having proven his point. “She doesn’t even pay attention.”

I took a step closer, but a clear, determined voice from across the table stopped me in my tracks. I know that voice better than I know my own, but there was an anger in it that I didn’t recognize.

“STOP IT!” said the voice. “STOP MAKING FUN OF MY SISTER.”

“She doesn’t even know,” the little boy said flippantly.

The voice got stronger, clearer. “It doesn’t matter if she knows it or not. STOP making fun of her. You don’t make fun of ANYBODY. EVER.”

I felt like a raw nerve.

I was proud.

I was angry.

I was torn to shreds.

For Brooke.

For Katie.

For all of us.

Hot tears ran down my cheeks in the car on the way home. My stomach churned with the bile of anger and fear. Is this what happens at school? Is this Brooke’s life when we’re not around? I wondered.

He may be right; she may not know. She may not understand. I’m not convinced. She sees so much more than we think she does. But even if she doesn’t know now, she will. Then what?

Can I protect her from the sting of ignorance?

That little boy is not a bad kid. Not by a long shot. Later in the party, Brooke yelped sharply when the kids were crowded into a line. He was the first one to ask her what was wrong.

I’m debating calling his mom tomorrow. If I do, I’m going to start the conversation by telling her that she’s got a kid with a heart. I haven’t yet decided if it’s the right thing to do. It would not be an easy conversation.

But how else do we do this? If not by changing perception and talking to each other – building understanding one tough conversation at a time, then how?

Seven years later, I can tell you that the answer is right here, in this room. It’s an open conversation with our kids. It’s perspective-taking and the freedom to ask questions. It’s hearing about disability from those who live life through its lens. It’s Understanding Our Differences.

Years later, that kid, the one who had been convinced that Brooke couldn’t even register his insults, became one of her favorite people at school and she his. They had a routine that they did together from the viral video, “Charlie bit my finger.” They did it every time they saw each other. Her aide told me that he sought her out at every opportunity so that they could do their thing. Because demystifying difference, seeing disability not as a barrier to friendship but a natural part of the human experience changes everything.

Last weekend, we threw a thirteenth birthday party for my girl. The next day, I wrote the following on Diary’s Facebook page:

Something incredible happened at Brooke’s party last night. And it was, well, let’s just say that I’m still processing it.

As you know, Brooke planned her party, including the “surprise” at the beginning. (My girl loves a surprise party, but only if she knows it’s coming, so she plans her own. It’s kind of genius.)

Anyway, my favorite part was when, after the kids shouted, “SURPRISE! HAPPY BIRTHDAY, BROOKE!” upon her (meticulously planned) entrance, she put her hands in the air and said, “Wait, what’s all this?” but that’s neither here nor there in the story.

Before the surprise, while she was still holed away in her room, we had the kids (at her request) make signs to hold up for her when they yelled. On them, I suggested that they write something that they did with her that made them laugh and that they thought would make her laugh to read.

And they did. Oh, they did. They each began to write (and share out loud) the scripts that each of them have with her. Those very same scripts that we’ve been told time and time again to ignore or reshape – the ones we’re all so often told (falsely) are devoid of real meaning.

And as they were writing them on the signs, they began to compare notes. And then grill her older sisterKatie – asking if she knew the origin of “POLKa Dot!” or “Throw it back to Sammy!” or “Gonna eat a lot of peaches.”

As Katie did her best to tell them where the scripts had originated, one girl said, “Wait, she says this at home too??” and Katie laughed and said, “Seriously? This is my life.”

When Brooke came down and after they’d surprised her, they started doing the scripts with her. And it became this game in which the kids were trying to one-up each other with who knew more of them.

And then they began to do them as a group – fourteen voices reciting these snippets of dialogue from movies and songs and Brooke’s imagination – these tiny yet sturdy threads of connection with the world around her and all of these kids knew them and enjoyed them and as I stood at the top of the stairs I heard them saying, “Brooke is so much fun,” and, “You guys do that one too?” and above all, I heard my girl, giggling and squealing and so, so happy. She was in heaven.

Eleven kids came to the party (along with Brooke, Katie and our cousin, Hannah). Three were kids that she met this year in chorus.

I have a confession. I was nervous about them coming. I was nervous about how they might react to Brooke’s made-up party game or her insistence that they watch the only movie in her repertoire – Alvin and the Chipmunks. I was nervous about their reaction to my thirteen year-old’s Hello Kitty / Dora the Explorer / My Little Pony cake or her contrived “surprise.”

I shouldn’t have been.

NT or neurodiverse, my kid finds her people.

They’re the ones who script with her and laugh with her and who, without asking what she’d like, buy her magic markers and coloring books and My Little Pony tote bags as gifts because they already know what she loves – because they see her. They SEE her.

I desperately wish that all the people who have told us to ignore, discourage, reshape, reframe, and replace Brooke’s “meaningless” scripts could have been there last night. To see just how much meaning they have. And to hear what it sounds like when fourteen voices bring them to life in celebration of the kid who has used them to connect with people who love her – exactly as she is.

It was an incredible moment and one that couldn’t have happened in a vacuum. When Broke was headed to middle school, we knew that the program she is now in was going to be perfect for her. It’s a substantially separate program for students on the autism spectrum and serves her needs to a tee. Sadly though, it isn’t housed in her home school. We were terrified of putting her into a middle school full of brand new kids. Let’s be honest, middle school can be torture under the best of circumstances, and these certainly were not the best of circumstances.

But these kids, the ones she’s met in advisory and chorus and in the musical, are the ones who are competing with one another to see who knows more of her scripts, who are coming to her party and shouting surprise and speaking the language that they’ve created with her.

THAT is the work of Understanding our Differences. That is what happens when we raise our kids to have a stake in inclusion, to see each other as fully human, to respect and revel in our differences.

And we should celebrate that moment. That perfect example of progress and friendship and the celebration of our shared humanity. But so too, we have to acknowledge that there is more work yet to do.

Three days after the party, I was talking to the mom of one of Brooke’s autistic friends in another school in our district. Her son had been returning to class from PE that afternoon when another kid stopped him in the doorway, blocking his entry. When he asked to pass by, the kid said no. And then he called him a retard.

No child – not yours, not mine, not Brooke’s friend, should ever know the sting of that kind of ignorance, that kind of fear, that kind of hurt.

After Brooke’s party last weekend, Katie told me about a guest asking her whether or not she thought that Brooke could understand something they’d been talking about. Katie was offended on behalf of her sister. It was something so simple, she said, what must he think of her if he really thought she couldn’t get it? After a moment, she stopped herself. “He seems like a really nice kid,” she said. “He just needs to be educated about autism. So he’ll know that not being able to express something is different than not getting it.”

Understanding our Differences provides that education. And in so doing, changes lives. It transforms kindergarten bullies into fifth grade friends. It creates an environment in which everyone can thrive. And it nourishes the living, breathing organism of inclusion. Not just in our schools, but throughout our communities.

Your support for this vital work is so very much appreciated. For your sweat equity, your financial support, your contributions in myriad ways to the progress to date and to the work yet to do, thank you.

And thank you for having me. It’s an honor to be a part of Understanding our Differences.